In healthcare, information, especially the one related to a patient’s health, is key to the care provided. Faulty treatments, in most cases, can be attributed to improper communication of critical data. The adoption of information technology by healthcare providers has resulted in reducing many of these errors. However, amidst all these developments, the patient has in some ways been left out. The data related to one's own care is either not available with the patient or is beyond his / her comprehension. As a result, the patient is completely dependent on the doctor when it comes to making a decision regarding his / her treatment. However, the Internet has changed this scenario drastically. Today, information about diseases, treatments and medicines is available at the click of a button.

Storing medical records online

Electronic Medical Records (EMRs) have made the storage and management of large volumes of health data electronically possible. Since, EMRs served only doctors, a tool to help patients manage their health information was still missing. This scenario changed with the introduction of online Personal Health Records (PHRs). Like in industries such as banking, the Internet is empowering consumers by enabling them to take control of their health information. This movement is a part of the ongoing trend of consumer-driven services that has been driving healthcare for the past few years.

Unlike EMRs, a PHR is created and managed by patients, their caregivers or family members. Other key players involved in PHRs are healthcare providers, medical equipment providers, insurers, pharmacies, employers and organisations providing health-related information.

Functions and Advantages

Allows patients to access their health information from any place at any time, so that they can easily monitor and manage their health and enables them to get better treatment for their ailments and diseases

Not surprisingly, doctors have been endorsing PHR by switching over to digital and online records. The response to PHRs has been most visible in Europe and USA, where the move to consumer-centred healthcare is taking place at a rapid pace. A US survey in 2005 by the Markle Foundation found that 60 per cent of respondents supported the creation of a secure online personal health record service. "In the US and Europe major private healthcare organisations have come to recognise the potential value of PHR for improving customer satisfaction and loyalty, and as a mechanism for reducing and raising revenue," says Dr Claudia Pagliari, Senior Lecturer in Primary Care, School of Clinical and Community Health Sciences, University of Edinburgh, UK.

Also, many IT companies have shown interest towards providing online PHR services. Organisations like Kaiser Permanente, Microsoft, Google, IBM, Intel etc. have already made their services available. More companies are likely to jump into the foray as the presence of PHRs spreads. This augurs well for patients as well as healthcare providers.

The potential benefits of PHRs in Asia are numerous. Compared to their western counterparts, healthcare consumers in Asia have little or no control over their health information. "In the developing countries PHRs have the potential to become a transformative technology by balancing the power differential between consumers and providers of healthcare," opines Dr Pagliari. Giving people control over their information could not only improve their awareness towards healthcare, but also encourage them towards self-care. Though there are some online PHRs in Asia, they are far and few in number. With sustained efforts from the IT companies, this scenario is likely to improve. Ubiquity of the Internet permits the patients to easily access their health records any time, online.

Perspectives

A typical PHR website helps the patients in recording their health information and sending health data from their EMR to a doctor or a healthcare provider. It enables patients to actively participate in maintaining their own health checkups by providing information on diseases, prognosis, causes, symptoms, treatment, diagnosis, prevention, complications, etc. It also provides health management tools-assists a patient with the information contained in their record, helps the patient in booking appointments online with doctors and allows patients to choose home-based self-monitoring medical devices. "Integrated PHR systems that enable online appointment booking or results collection can enhance patient convenience and satisfaction," adds Dr Pagliari.

Microsoft's HealthVault, for example, offers a way to connect, store and share the entire patient's information in one place, without being tied to a closed, siloed database. Online PHRs also allow patients to interact and share experiences, which could further encourage self-care.

A website providing PHR services also provides information about diseases and treatments. The availability of information on various diseases, conditions and treatments on the Internet has made patients more aware and demanding. This information, sourced mostly from organisations and focussed on research in these areas, is more reliable as it comes from a credible source. By giving the patient control over information related to their disease, PHRs add another dimension to this change underway in healthcare.

Scenario in India

There has been an impressive growth in India's healthcare sector. "Well-informed patients are now demanding their doctors in India to treat them with more respect and be more transparent," says Dr Aniruddha Malpani, Medical Director, HELP - Health Education Library for People, India. However, EMRs are yet to become a part of the mainstream. Medical records are maintained mostly in the form of hand written text as in doctor's consultation or typed text on paper.

Whilst healthcare records are being made online and few companies are getting into developing online PHRs, India still has a long way to catch up with the technology and advancement in healthcare services. "In developing countries much patient care remains at the paternalistic end of the spectrum, increasing the potential of PHR to become a transformative technology by balancing the power differential between consumers and providers of healthcare," says Dr Claudia Pagliari.

Doctor-patient relationship

Perhaps the biggest change that an online PHR would bring to healthcare is in the patient-doctor communication. "Increased access to and control of personal data may raise patients' motivation for self-care and improve doctor-patient communication and shared decision making," says

Dr Pagliari. With their ease of use, PHRs help in getting the patient involved in the treatment he receives. It allows the patient to report even the minor problems he or she had faced during th treatment to the doctor. By doing this, the possibility of the condition spiralling out of control can be checked and eliminated. The doctor can decide the course of action that needs to be taken and, if needed, an appointment can be fixed. Clear communication between the doctor and the patient helps build confidence into the relationship. "PHR greatly enhances the doctor-patient relationship," says Dr Bill Crounse, Senior Director, Worldwide Health, Microsoft Corporation. This transparency would lead to reduction of medical errors. "Greater transparency of information may also enable the identification of errors by patients, which has potential to improve patient safety by highlighting unrecorded allergies, outdated diagnoses or inappropriate medications," opines Dr Pagliari.

Further, as the patient's health information is recorded in the online PHR, the data would remain intact even when the patient changes his / her primary care physician. The record provides the doctor with the patient's medical history, which helps the doctor get an overview of the case and plan treatment accordingly.

In case of emergency, the treating doctor would have ready access to all the necessary information about the patient-thus avoiding possible medical errors. This is a dramatic change over what exists today in the EMRs, which may not be accessible across different networks.

Privacy, confidentiality.

The major challenge facing online PHRs is to chuck out security, privacy and confidentiality threats. The top concern of the consumer is the potential misuse of data from their health record. A few companies that offer PHR services, for example, could share the data with third-party firms without the patient's consent.

The privacy concerns, therefore, revolve around the ones who have an access to the information. An individual who signs up for an Internet-based service with password controls an untethered PHR. The privacy of his data depends on how best the service provider is able to guard the information. Potential threats from hackers also cannot be ignored. Individual provide their health information or sends pertinent documents to the PHR vendor to be filed in the record. Service providers, therefore, are making all possible efforts to meet existing data security standards, even as new ones are being put in place by various government and non-government organisations.

In the US, for example, an online PHR system should at least have privacy measures equal to those in Health Insurance Portability and Accountability Act 1996 (HIPAA). The National Committee on Vital and Health Statistics (NCVHS) subcommittee has been conducting hearings on privacy and confidentiality and the Nationwide Health Information Network (NHIN), and additional recommendations will be forthcoming. Standards should cover all the key areas in making the PHR implementation easy and reliable. In response to the threat concern from health plan, employer or provider organisations handling data due to lack of portability, AHIP and the BlueCross BlueShield Association (BCBSA) of US have undertaken an initiative to adopt standards for the essential data content of PHRs as well as for messaging among them in order to make PHR data transportable among health plans. The standards from The Health Information Technology Standards Panel (HITSP) will be used as a part of Commission on Certification of Health Information Technology (CCHIT) certification criteria for Electronic Health Records (EHR) and PHRs over the next three years.

In UK, Commons Health Committee is working on the development of the national electronic record system.

Canada Health Infoway and the Canadian Standards Association have signed a cooperative agreement to advance health information technology standards in managing PHRs.

The result.

Though there are concerns, healthcare consumers have shown interest in moving their PHRs online as it gives them a sense of control and involvement. PHRs could also play a vital role in improving healthcare delivery, promoting wellness and disease prevention.

The journey towards creating online medical records-from unstructured medical records to paper-based medical records to computerised records and then on to online medical records now-has been charted over a period of almost a decade. Online PHRs could solve the information needs of doctors at all levels of treatment.

Interoperability, the major hurdle to the proliferation of EMRs, could be a thing of the past with the Internet and the presence of universal guidelines for PHRs.